I first met Mary Van Neste in 1980, six years after she was diagnosed with scleroderma, a progressive disease of the body’s immune system. Determined to make the most of her life, the young Milton mother and former Weymouth teacher overcame many obstacles to live to age 67. She died in 2008 and a walk in her memory will be held June 28 in Plymouth to raise money for the Scleroderma Foundation’s New England chapter, which she helped to found. (Open the story to hear an interview with her daughter, Mary Lou Buell.)
In 1980, I interviewed a 39-year-old Milton woman with a strange disease I’d never heard of called scleroderma. That encounter with Mary Van Neste has stayed with me.
Her illness was so cruel and relentless and she was so courageous, determined to do her best, touchingly open about how vulnerable she felt and the struggles within her spirit. When the disease was diagnosed, she was 33 and had two kids in diapers. Her hands were so stiff, she couldn't even change them.
Scleroderma in a chronic autoimmune disease that attacks the body’s tissue. Six years into it, Mary’s skin was thick and tight, her hands and feet swollen, her fingers twisted and turning inward, her joints stiff and aching.
Mary knew she was fortunate to have her husband, Phil – a teacher in Weymouth, where she also had taught – and their daughters, Mary Lou, 8, and Brianne, 6. That day, I could hear them happily playing outside.
I wrote the story and moved on. From time to time, I would think about Mary and wonder how she was doing. I didn’t expect she would live a long life.
A month ago, I had a call from her husband in Falmouth. His voice catching, he told me Mary had died in August. He said to honor her, there would be a fundraising walk June 28 in Plymouth to benefit the New England Chapter of the Scleroderma Foundation, an organization she helped found.
Mary Van Neste lived for 34 hard-fought years with the disease, much longer than expected. She never was able to return to teaching, but her daughter, Mary Lou Buell, 37, of Duxbury, is a history teacher at Weymouth High.
“My mother was amazing – all the things she lived through,” Buell said. “Just when we thought we had seen the worst, something else would happen. She was so inspirational to me.”
Through a litany of medical crises, Mary showed her family she could hang in there and face any obstacle.
Mostly, she did all this with little obvious self-consciousness. But as her appearance changed, she didn't like the lights on when she brushed her teeth. And although she often spoke to Harvard medical students about the disease, she wanted no autopsy. “I know they will be trying to get my body,” she said, but that was where she drew the line, her final privacy and dignity.
This, Buell said, is her mother’s legacy: “Your life has value, even if it may not be what you planned. Things happen and I think, ‘What would my mother say?’ She'd say, ‘Do the best you can and don’t worry about it.’ She was so feisty and aware.”
Buell only saw her mother cry once, a month before she died, when she said, “I don’t think I’m ever going to the beach again.” Come Sunday, she will be there in spirit.
“The Inaugural Walk, Talk & Rock To Cure Scleroderma” is Sunday at Nelson Street Beach. Call 888-525-0658 or visit http://scleroderma.org
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Reach Sue Scheible at email@example.com, 617-786-7044, or The Patriot Ledger, Box 699159, Quincy 02269-9159. Read her Good Age blog on our Web site.